What to Expect With End-Stage Heart Failure

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End-stage heart failure is the most advanced stage of congestive heart failure. At this point, treatments don’t offer too much symptom relief.

There are four stages of heart failure. The first two stages—A and B—are considered pre-heart failure, where lifestyle changes and medications can largely keep the condition at bay. By stage C, you may have symptoms like swollen limbs, fatigue, and shortness of breath with physical activity.

By stage D, the heart has experienced significant damage, and it has begun to affect how other organs work, like the kidneys. Treatment for this stage includes surgery, heart transplant, or ventricular assist devices. You may also pursue hospice care—treatment based on comfort alone.

Signs

Congestive heart failure is usually thought to be a condition of the heart, but it can affect other organs as it progresses. It continues to get worse with each flare-up, or exacerbation, and 90% of people with the condition eventually die of pump failure.1 This is when the heart can no longer function as a pump, and circulation of blood and oxygen through the body stops.

Symptoms of end-stage heart failure stem from this deterioration of the heart’s pumping power. As the heart grows weaker, it can’t pump enough blood to other parts of the body, and blood and fluids begin to back up.

Tissues and organs that don’t receive enough blood, oxygen, and nutrients fail to work effectively. The symptoms of end-stage heart failure are caused by the body’s attempt to compensate for a weakened heart.

Symptoms of end-stage heart failure are similar to those in stage C, only they are more severe. They may include:2

  • Swelling and fluid collection under the skin
  • Shortness of breath, even at rest
  • Pulmonary edema, where excess fluid fills the lungs’ air sacs
  • Weakness and fatigue, especially with physical activities
  • Low blood pressure
  • Malnutrition, or failure of your body to absorb nutrients
  • Sudden weight gain
  • Increased nighttime urination

Coping

As your end-stage heart failure progresses, it will become more difficult to perform routine daily activities like bathing or walking through your house. You may require home care, a move to a skilled nursing facility, or frequent or continued hospitalization.

At advanced stages, you may need to be hospitalized for intravenous medications, oxygen therapy, or other treatments. If you don’t improve with hospitalization or need skilled nursing care, your medical team may recommend hospice or palliative care:

  • Palliative care: Contrary to what many people believe, palliative care is not necessarily end-of-life care. Palliative care focuses on relieving symptoms and discomfort caused by a chronic illness. Treatments continue with palliative care in many cases, but there is a greater focus on improving the quality of life. In people with heart failure, a palliative care visit during a hospital stay for heart failure was linked to decreased future hospital stays and intensive care unit admissions, and fewer aggressive treatments.3
  • Hospice care: Hospice care also focuses on comfort and quality of life, but you also make the decision with hospice care to forgo additional invasive or lifesaving measures.

Prognosis

Only about half of the people who have heart failure that’s in stage C or beyond live for five years after their diagnosis.3 More than a third of people with advanced heart failure die within a year of being hospitalized.

People who receive heart transplants or a ventricular assist device, which can help the heart pump out blood as it grows weaker, have a better outlook. While life expectancy on a ventricular assist device is limited, people can often expect to live 10 years or more after a successful cardiac transplant procedure.1

The American Heart Association (AHA) supports frequent conversations between you and your medical team in end-stage heart failure. Shared decision making is a partnership between you and your doctor where you openly and regularly discuss your condition, treatment options, and prognosis.

To help with the shared decision-making process, AHA offers the following checklist:4

  • Annual review of your condition and progress, current treatment goals, and plans to address emergencies and worsening of your condition
  • Review of treatment goals after “milestone” acute events like a hospitalization, heart attack, or need for defibrillator shock
  • Open and honest conversations about the side effects and quality of life impact that different treatments or worsening of symptoms may cause
  • Discussions about the impact of your condition and treatment options on you and your caregivers or family
  • Palliative care alongside medical treatment to help manage symptoms
  • Hospice care or other end-of-life planning to make sure your wishes are met when your condition advances

What Does Moving to Hospice Care Involve?

If you and your family have made the decision to pursue hospice care while receiving inpatient care, a case manager or social worker can help facilitate the process. If you are at home and would like to transition to hospice care, hospice agencies can help make the arrangements. Hospice agencies will review your needs and have a doctor order the appropriate medications for you. These medications will focus not on treating your condition, but on managing your symptoms and comfort as much as possible.

Caregiver Support

Supporting and caring for family and friends with end-stage heart failure can be difficult. At advanced heart failure stages, a person with this condition will need help with their daily activities.

Coping with the demands of caregiving can be difficult. If you are a caregiver, enlist the help of others, and involve your own healthcare providers in creating a plan that keeps your health and well-being in mind. There are services that can offer respite care, or temporary medical care for the people you care for when you need a break.

Palliative and hospice care can help caregivers cope as their loved one’s condition deteriorates, and they can find ways to make them comfortable as much as possible. The American Heart Association also recommends that caregivers find support groups in their community or online.5

Frequently Asked Questions

What is end-stage heart failure?

End-stage heart failure is the most advanced stage of heart failure. At this stage, medications and treatments can no longer improve the symptoms or prognosis. The focus of treatment at this stage will be to manage your symptoms as best as you can and prioritize comfort.

What are the signs of end-stage heart failure?

In end-stage heart failure, you may experience severe shortness of breath, swelling, and fatigue. It may become difficult to live independently and meet your own daily needs.

What should I expect at end-stage heart failure?

In end-stage heart failure, you may need frequent hospitalizations, and each acute event may make your condition worse. Your healthcare team may suggest skilled nursing, palliative, or hospice care to help you manage your condition.

How long can you live with end-stage heart failure?

Heart failure is a chronic, progressive condition that worsens with each flare-up. Your outlook and prognosis are better if you are healthy overall, you have been following your treatment plan, and you are responding well to your treatments. Being willing to pursue invasive treatments like a heart transplant will also increase your life expectancy.

Summary

End-stage heart failure is the most advanced form of heart failure, where your heart cannot pump blood effectively to meet your body’s needs. Treatments that have helped you manage earlier stages of the disease may not work anymore, and your healthcare provider will prioritize alleviating the discomfort of your symptoms. It’s still important to stay healthy because that could potentially improve your prognosis.
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What Should Happen to Our Data When We Die?

Anthony Bourdain’s A.I.-generated voice is just the latest example of a celebrity being digitally reincarnated. These days, though, it could happen to any of us.

By Adrienne Matei

The new Anthony Bourdain documentary, “Roadrunner,” is one of many projects dedicated to the larger-than-life chef, writer and television personality. But the film has drawn outsize attention, in part because of its subtle reliance on artificial intelligence technology.

Using several hours of Mr. Bourdain’s voice recordings, a software company created 45 seconds of new audio for the documentary. The A.I. voice sounds just like Mr. Bourdain speaking from the great beyond; at one point in the movie, it reads an email he sent before his death by suicide in 2018.

“If you watch the film, other than that line you mentioned, you probably don’t know what the other lines are that were spoken by the A.I., and you’re not going to know,” Morgan Neville, the director, said in an interview with The New Yorker. “We can have a documentary-ethics panel about it later.”

The time for that panel may be now. The dead are being digitally resurrected with growing frequency: as 2-D projections, 3-D holograms, C.G.I. renderings and A.I. chat bots.

A holograph of the rapper Tupac Shakur took the stage at Coachella in 2012, 15 years after his death; a likeness of a 19-year-old Audrey Hepburn starred in a 2014 Galaxy chocolate ad; and Carrie Fisher and Peter Cushing posthumously reprised their roles in some of the newer “Star Wars” films.

Few examples drew as much attention as the singing, dancing hologram that Kanye West gave Kim Kardashian West for her birthday last October, cast in the image of her late father, Robert Kardashian. Much like Mr. Bourdain’s vocal doppelgänger, the hologram’s voice was trained on real audio recordings but spoke in sentences never uttered by Mr. Kardashian; as if communicating from the afterlife, the hologram expressed pride in Ms. Kardashian West’s pursuit of a law degree and described Mr. West as “the most, most, most, most, most genius man in the whole world.”

Daniel Reynolds, whose company, Kaleida, produced the hologram of Mr. Kardashian, said that costs for projects of its nature start at $30,000 and can run higher than $100,000 when transportation and display are factored in.

But there are other, much more affordable forms of digital reincarnation; as of this year, on the genealogy site MyHeritage, visitors can animate family photos of relatives long dead, essentially creating innocuous but uncanny deepfakes, for free.

Though most digital reproductions have revolved around people in the public eye, there are implications for even the least famous of us. Just about everyone these days has an online identity, one that will live on long after death. Determining what to do with those digital selves may be one of the great ethical and technological imperatives of our time.

Ever since the internet subsumed communication, work and leisure, the amount of data humans create daily has risen steeply. Every minute, people enter more than 3.8 million Google search queries, send more than 188 million emails and swipe through Tinder more than 1.4 million times, all while being tracked by various forms of digital surveillance. We produce so much data that some philosophers now believe personhood is no longer an equation of body and mind; it must also take into account the digital being.

When we die, we leave behind informational corpses, composed of emails, text messages, social media profiles, search queries and online shopping behavior. Carl Ohman, a digital ethicist, said this represents a huge sociological shift; for centuries, only the rich and famous were thoroughly documented.

In one study, Dr. Ohman calculated that — assuming its continued existence — Facebook could have 4.9 billion deceased users by the century’s end. That figure presents challenges at both the personal and the societal level, Dr. Ohman said: “It’s not just about, ‘What do I do with my deceased father’s Facebook profile?’ It’s rather a matter of ‘What do we do with the Facebook profiles of the past generation?’”

The aggregate data of the dead on social media represents an archive of significant humanitarian value — a primary historical resource the likes of which no other generation has left behind. Dr. Ohman believes it must be treated as such.

He has argued in favor of designating digital remains with a status similar to that of archaeological remains — or “some kind of digital World Heritage label,” he said — so that scholars and archivists can protect them from exploitation and digital decay.

Then, in the future, people can use them to learn about the big, cultural moments that played out online, like the Arab Spring and the #MeToo movement, and “zoom in to do qualitative readings of the individuals that took part in these movements,” Dr. Ohman said.

Public social media profiles are one thing. Private exchanges, such as the email read in the Bourdain documentary, raise more complicated ethical questions.

“We don’t know that Bourdain would have consented to reading these emails on camera,” said Katie Shilton, a researcher focused on information technology ethics at the University of Maryland. “We don’t know that he would have consented to having his voice manipulated.” She described the decision to have the text read aloud as “a violation of autonomy.”

From an ethical standpoint, Dr. Shilton said, creating new audio of Mr. Bourdain’s words would require the permission of those close to him. In an interview with GQ, Mr. Neville said he “checked” with Mr. Bourdain’s “widow and his literary executor,” who approved of his use of A.I.

For her part, Ottavia Busia, Mr. Bourdain’s ex-wife, said she did not sign off on the decision. “I certainly was NOT the one who said Tony would have been cool with that,” she wrote on Twitter July 16, the day the film was released in theaters.

Celebrity Holograms and Posthumous Privacy

As Jean-Paul Sartre once put it: “To be dead is to be a prey for the living.” It’s a sentiment that philosophers are still mulling over today, and one that Patrick Stokes, the author of “Digital Souls,” sees as directly related to digital remains.

As he sees it, creating a digital version of a deceased person requires taking qualities from the dead that are meaningful to the living — such as their conversations and entertainment value — and leaving the rest behind.

“We’ve crossed into replacing the dead,” said Mr. Stokes, a senior lecturer in philosophy at Deakin University. “We’ve crossed into not simply finding a particularly vivid way to remember them, but instead, we found a way to plug the gap in existence they’ve left by dying.”

In the case of public figures, there is an obvious financial incentive to create their digital likenesses, which is why their images are protected by posthumous publicity rights for a certain period of time. In California, it’s up to 70 years after death; in New York, as of December 2020, it’s 40 years post-mortem.

If a company wants to use the image of a deceased person sooner, it requires consent from the deceased’s estate; resulting collaborations can be mutually profitable. As such, moral guardianship can be complicated by financial motives.

Some artists are explicitly expressing their desires. Robin Williams, for instance, who died in 2014, filed a deed preventing the use of his image, or any likeness of him, for 25 years after his death as an extra layer of protection on top of California’s law.

Consumers are also making their opinions known. The company Base Hologram, which has produced hologram shows of Roy Orbison, Buddy Holly and Maria Callas, reversed plans to put likenesses of both Whitney Houston and Amy Winehouse on tour, after they were criticized as exploitative. Just because producing such performances is legal doesn’t mean audiences will accept them as ethical.

Currently, United States federal law does not recognize the dead’s right to privacy, said Albert Gidari, a lawyer and former consulting director of privacy at the Stanford Center for Internet and Society.

“But,” he said, “as a practical matter, because so much of the information about you is in digital form today, residing with platform providers, social media and so on, the Stored Communications Act actually does protect that information against disclosure without prior consent.”

“And obviously, if you’re dead, you can’t consent,” Mr. Gidari added. A consequence is that families of dead individuals often cannot recover online data from their loved ones’ digital accounts.

As a way of asserting agency over their digital legacies, some people are choosing to create their own A.I. selves using a growing number of apps and services.

Some, like HereAfter, are focused on family history. For $125 to $625, the company interviews clients about critical moments in their lives. Those answers are used to create a Siri-like chat bot. If your great-grandchildren, for instance, wanted to learn how you met your spouse, they could ask the bot and it would answer in your voice.

Another chat bot app, Replika, creates avatars that mimic their users’ voices; over time, each of those avatars is meant to become the ultimate empathetic friend, ever-available by text (free) and voice calls (for a fee). The service gained traction during the pandemic, as isolated people sought out easy companionship.

Eugenia Kuyda, the app’s creator, got the idea after her friend Roman Mazurenko died in 2015. She used what is known as a neural network — a series of complex algorithms designed to recognize patterns — to train a chat bot on the textual data he left behind, which communicated convincingly enough to charm Mr. Mazurenko’s mother. That same technology underpins Replika’s chat bots.

“Replika is primarily a friend for our users, but it will live on past their death bearing the knowledge about its creator,” Ms. Kuyda wrote in an email.

In December 2020, Microsoft filed a patent for “Creating a conversational chat bot of a specific person,” which could be used in tandem with a “2-D or 3-D model of a specific person.” (“We do not have anything to share about this particular patent,” a Microsoft representative wrote in an email.)

Other projects seem aimed at offering emotional closure after the death of a loved one. In February 2020, a South Korean documentary called “Meeting You” was released. It chronicled the virtual-reality “reunion” of a woman named Jang Ji-sun and her young daughter who died from cancer.

The daughter’s avatar was created by Vive Studios in close conjunction with the Jang family. The company has considered other applications for its V.R. technology — creating a “digital memorial park” where people can visit dead loved ones, for instance, or teaming up with health care providers guiding patients through grief.

This is all happening in the midst of a pandemic that has radically altered the rites around death. For many families, final goodbyes and funerals were virtual in 2020, if they happened at all. When digital-afterlife technologies begin to enter mainstream use, they may help ease the process of bereavement, as well as foster connections between generations past and present and encourage the living to discuss death more openly with each other.

But before then, Mr. Stokes, the philosopher, said, there are important questions to consider: “If I do start interacting with these things, what does that say about my relationship to that person I loved? Am I actually doing the things that love requires by interacting with this new reanimation of them? Am I protecting the dead? Or am I exploiting them?”

“We have a rare chance to actually be ethically ready for new technology before it gets here,” Mr. Stokes said. Or, at least, before it goes any further.

Complete Article HERE!

The Dignified Exit

The Inevitable: Dispatches on the Right to Die

By Elena Saavedra Buckley

AS MEDICAL AND technological advances have made our world safer, it’s become much harder to kill oneself painlessly, even if one intends to. Asphyxiation by carbon monoxide, usually done by inhaling car exhaust in an enclosed garage, has gotten harder as the automobile industry’s emissions levels lower over time. Ovens have followed a similar trend, with natural gas models outplacing those that run on coal. The shift is especially true when it comes to medications. Use of Nembutal, the barbiturate that killed Marilyn Monroe, declined in the second half of the 20th century and was eventually discontinued in the United States, leaving available fewer substances that can cause a nonviolent overdose. (Other lethal medications have multiplied in price, sometimes threefold or more.) For those who desire “rational” suicide — done after consideration rather than, as is more typical, spontaneous despair — options are limited outside uncertain and gory methods. We live more protected lives than we once did, but, in exchange, the ability to end our lives peacefully is kept out of reach, like a bottle of recalled pills.

The subjects in Katie Engelhart’s essential, vulnerable book, The Inevitable: Dispatches on the Right to Die, question these barriers. Since the mid-20th century, conversations on assisted suicide have grown, as laws allowing it have passed around the world. In popular conversation, Engelhart writes, people who use assisted death usually fit an archetype: elderly, secular, white people, with terminal diseases and supportive families, take advantage of rare right-to-die laws soon before their likely natural death. They throw back a lethal cocktail of liquid drugs under the watch of a doctor and their loved ones. They fall asleep, and, within a few hours, their heart stops. “While most reporting about the so-called right to die ends at the margins of the law, there are other stories playing out beyond them,” Engelhart writes. “Didn’t I know that whenever the law falls short, people find a way?”

Engelhart, a former reporter for VICE and NBC News, profiles two rogue doctors and four subjects who seek assisted death in a variety of illicit shades: an elderly British woman who feels she has lived the life she wants; an American woman in her 30s with worsening multiple sclerosis; an American woman sinking into dementia’s abyss; and a 25-year-old Canadian man with complicated, severe depression. Engelhart profiles them as they either seek help with suicide, through mail-order chemicals or services overseas, or challenge the limits of their country’s laws. Engelhart is ever thoughtful; the approach can fall flat during meetings with secondary doctors or interviews with philosophers (summoning more than one description of office shelving), but Engelhart’s main portraits, and her careful relationships with her subjects, powerfully animate her central questions: what is dignity, and what does it mean to die with it?

As she chases dignity’s meaning, Engelhart meets early dead ends. Some of her interviewees brush off the question, saying that dignity amounts to feeling respected, making their own choices, and, mostly, being able to wipe their own asses. (“When someone has to change my diaper, I don’t want to live.”) But if dignity can be understood at an individual level, it is twisted by the systemic factors Engelhart describes that lead to death wishes: the specter of melancholic senior living facilities, unsuccessful mental health treatments, and impossibly expensive health care. The Inevitable is international in scope, but these pressures loom largest in the American medical system. When visiting Brussels, Belgium, Engelhart speaks to Wim Distelmans, an oncologist and euthanasia proponent, about whether assisted death should be offered to more people in the United States. “It’s a developing country,” he tells her. “You shouldn’t try to implement a law of euthanasia in countries where there is no basic healthcare.” A reader wonders, then, what it means to assert dignity within circumstances that do not do the same.

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Voluntary euthanasia may appear in Thomas More’s vision of Utopia, but doctors have long struggled to write it into their job descriptions. In 1995, the American Medical Association stated that “[p]hysician-assisted suicide is fundamentally incompatible with the physician’s role as healer,” and the National Hospice and Palliative Care Organization opposes the practice. The membrane between palliative care and assisted suicide is thin, though — in some cases, tending to fading life with pain-relieving drugs functions as a kind of assisted death, albeit a slow one. Engelhart roots this dissonance in the 20th century’s effort “to conceptually transform old age from a natural phase of life into a stage of disease,” she writes, “and, by extension, something to be defeated, rather than embodied or endured.”

Assisted suicide has been legal in Switzerland since 1940, and some other European countries, like Belgium, have allowed it since the 1990s. (Parts of Australia and Canada allow it, too.) Its American history is piecemeal. As health-care prices climbed sharply in the 1970s and ’80s, a string of high-profile cases of young white women on life support drummed up public conversation. Then, in 1994, Oregon became the first state to legalize assisted death. Other states followed Oregon’s strict parameters: a patient must be terminally ill and have six months or less to live, and they must have the mental capacity to make the decision, as determined by a doctor. On their chosen deathbed, a doctor will give them the lethal barbiturate, but they must lift it to their own mouth in a final, performative gesture of agency.

Opponents of assisted death have long argued that the practice will fall down a slippery slope of exploitation. Poor patients and the elderly, critics say, will feel pressured to die rather than rack up medical costs for their families. People with depression will choose it over trying more treatments. Historically, voluntary euthanasia and eugenics attract similar supporters, and today, some disability rights groups warn that the practices are “fatally tangled.” (One doctor Engelhart speaks with wants to create machines that can provide assisted death more easily than drugs; he sheepishly describes one of his coffin-like prototypes as “a little Auschwitzy.”) So far, though, there is no evidence from Oregon or other states that the laws have caused disproportionate deaths in any demographics. In fact, the opposite might be true. Engelhart spoke to doctors who knew of patients who qualified under the laws, and who wanted to die, but who could not afford the drugs. “Poor patients sometimes had to live,” she writes, “while richer patients got to die.”

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Like much great narrative journalism, The Inevitable powerfully justifies its form when mapping how people relate to each other outside dominant systems — in this case, how end-of-life care can exist away from, or in opposition to, big medicine. Beyond trickster doctors like Jack Kevorkian — the American pathologist, dubbed “Doctor Death,” who in the 1990s turned assisting suicides into a kind of civil disobedience — barely underground networks have offered assisted death to people who don’t meet the law’s eligibility. One of Engelhart’s subjects, Debra, is a widow in Oregon who does not want to fully succumb to her dementia. She ends her life before that happens with the help of the Final Exit Network, a group of volunteers who instruct the elderly on how to commit suicide and accompany them through it. When she is ready, two volunteers arrive at her house, hug her, and kneel next to her wheelchair while she uses a plastic bag and gas canister to stop her own breathing. Even with its analog methods, this moment feels dignified, closer to what care should look like — especially when put into relief by the police who show up to her door some hours later.

Other narratives are murkier. A woman named Maia, the only main subject from the book who is still alive, speaks with Engelhart while working through the decision to schedule her death at a clinic in Basel, Switzerland, seeking relief from multiple sclerosis. Maia is slowly and painfully approaching paralysis. “I believe the soul travels on and wants to be free from this prison that has become my body,” she wrote in her application to the clinic. Maia felt early, undiagnosed symptoms of her MS in her 20s, but, following the advice of her father, she hoped for the best and declined treatment. Once the debilitation became obvious, she wondered whether those early treatments would have prevented the disease’s severe progression. The future she is left with will require constant assistance and treatments. In the United States, it will send her into poverty. (She unsuccessfully attempts the most American of options: a GoFundMe for medical expenses.) Maia is sure of her plan, but she seems consumed by wondering whether she could have lived a different life or whether she has suffered enough to end the one she has. Even with her Swiss appointment, she closely follows right-to-die bills in the United States. “On an idealistic level,” she tells Engelhart, “I’m obsessed with dying in my own country.”

For Maia, it seems, dying in the United States would be a kind of acknowledgment, an agreement that her country shares responsibility for her distress. The Inevitable is interested in dignity and how people define it, but it does not ask so explicitly whether the state, and the laws it creates, can recognize people’s dignity in the first place. If our systems of governance fail to care for so many — and kill others on death row and in the streets — can they be trusted to control the choice to die? If a “developing country” without universal health care did offer wide access to assisted death, one wonders whether its use could make that country’s ills more obvious, more urgent, less ignorable. When The Inevitable snaps back to the perspectives of its individual subjects, the implications of these political threads can get lost; the perspectives of nonwhite patients, or people who harbor more doubt in the medical system from the get-go, are also mostly absent from the narrative. Still, the book’s brilliance is in how much fertile ground it lays for these questions.

Near the end of The Inevitable, Engelhart profiles Philip Nitschke, an Australian doctor who has become one of the most vocal supporters of the unrestricted right to die. Nitschke founded Exit International, another organization like Final Exit Network. His is far more boundless than others; they sell The Peaceful Pill Handbook (2006) to almost anyone with instructions for safe suicide methods, and Nitschke gives public “DIY death seminars” with his wife’s help. He is at the radical end of the book’s spectrum, yet after the rigid patterns of death barely evaded by Engelhart’s subjects, his beliefs appear risky but benevolently imaginative.

When Nitschke started his career, he only accepted assisted death on a limited scale. But as he met the kind of people who could be in The Inevitable: Dispatches on the Right to Die — a taxi driver with stomach cancer, for one, who died painfully without the legal right to die — these limits dissolved rapidly. What did age have to do with it, really? And, more than that, if physical pain was an acceptable reason to end one’s life, shouldn’t mental pain be, too? Doctors and lawmakers, he came to believe, couldn’t pick and choose. There was simply too much gray area. “Philip came to think that efforts to suppress rational suicide were ‘a sign of an increasingly sick society,’” Katie Engelhart writes. “They were a sign that, maybe, society wasn’t so confident in its reasons for insisting on life.”

Complete Article HERE!

An increasingly popular way to be buried

— Become part of an artificial reef

Family members watch as a concrete “reef ball” — made in part with the cremated remains of their loved one — is lowered into the water off the coast of Ocean City, Md. The memorials help replenish reefs.

By Kathryn Fink

When Rob Shepherd’s wife, Beth, died of brain cancer at age 66, he knew she had wanted to be cremated. He didn’t know that six years later, he’d be waving goodbye to her remains from a boat in the Atlantic Ocean. Her ashes, now mixed in a concrete ball, were headed to the ocean floor to help form a reef.

Rob, a 69-year-old retiree in St. Louis, had been storing Beth’s cremated remains in their original plastic bag on a living room bookshelf; an urn, to him, felt too permanent. He had been planning to return her to Maryland, her childhood home — and he says it was “a gift from heaven” when he discovered a nonprofit called Eternal Reefs. Since its founding in 1998, Eternal Reefs has worked with families to create concrete “reef balls” that incorporate cremated remains, or “cremains,” and small personal items. Part memorial, part conservation method, they’re deposited to the ocean floor to replenish reef systems. The balls weigh between 600 and 4,000 pounds, and require a crane to be transported.

“I put in our two wedding rings and her favorite pair of earrings, because I know she wouldn’t want to be without her earrings,” Shepherd said in Ocean City, Md., in May, on the day Beth’s remains were placed into the sea. Her reef memorial cost $3,995 — not including the price of cremation, which is $350 on average. The median cost of a funeral with a viewing and cremation was $5,150 in 2019, according to the National Funeral Directors Association.

To avoid dealing with the Transportation Security Administration — which requires specific types of containers for traveling with cremains in carry-on luggage and can prohibit their entry onto planes — Shepherd had driven Beth’s remains from St. Louis. Later that day, he watched a crane lower her memorial ball into the Atlantic — permanently becoming a part of Russell’s Reef, an artificial reef site off the coast of Ocean City. He and the other families memorializing loved ones aboard the boat clapped.

Eternal Reefs grew out of the intersection of “deathcare” — an array of products and services related to death and memorialization — and the environmental movement. Now, against the backdrop of the pandemic, the green burial industry is proliferating. A 2021 survey conducted by the trade magazine American Funeral Director found that 51 percent of respondents have attended a green burial, and 84 percent would consider one for themselves. The green approach aims to reduce the environmental impact of burial and, in some cases, uses remains to repair the destruction humans have inflicted on the earth. These options can take many forms, including coffins made of mushrooms, water-based cremation (in which water and chemicals break down the body) and biodegradable pods that use remains to grow a sapling.

Like the rest of the funeral industry, green burial is regulated. A final disposition — the legal term for what happens to your body after death — is a complicated issue. Many emerging technologies require state legalization, including a new green burial approach of composting human remains. In December, a funeral home outside Seattle became the first to legally perform the process, known as “natural organic reduction.” Several other states are currently weighing its legality.

Since Eternal Reefs’ inception, it has deployed more than 2,500 reef memorials in 30 permitted locations, including off the coasts of Florida, New Jersey and Texas. CEO George Frankel says the demand for reef memorials has grown steadily — but in the past year, information requests and advance burial plans have skyrocketed. He attributes that uptick to the pandemic. “One of the problems we’ve always had as a culture in this country is that we don’t talk about death very easily or very comfortably,” he told me. “The covid virus has forced everybody to look at their own mortality in a whole different way.”

Still, plenty of people decided to pursue this option long before the pandemic. Linda Froncak, who was memorialized in her home of Ocean City the same weekend as Beth Shepherd, made preparations for her burial in the early years of Eternal Reefs. Originally from Minnesota, Froncak died of a heart attack two years ago at age 64, which is how 22 Minnesotans ended up flying halfway across the country to the coast of Maryland, sporting custom T-shirts in her honor that said “Reefer Madness” on them.

The funeral industry, which has long hinged on tradition, is seemingly at odds with the advent of green burial. However, funeral homes vary widely in their willingness to embrace new options. Crystal van Orsdel Marchant, a fourth-generation family employee at Van Orsdel Funeral & Cremation Services in Florida, told me that her fellow millennials are all for facilitating green burial, but the industry has always been resistant to change. She points to the 1970s as an illustration: Her family’s funeral home, like most others, held out on offering cremation services even as interest grew. They eventually bought a crematory after her father told his father repeatedly that they needed one.

Five decades later, cremation has surpassed the casketed burial rate in the United States, according to the National Funeral Directors Association — and Van Orsdel Funeral & Cremation Services now offers eco-friendly burial options, including willow caskets and biodegradable urns. Van Orsdel Marchant says the funeral home may also eventually replace its fleet of hearses with electric vehicles.

Some funeral home owners told me they’ve seen only the occasional request for green burial options. Whether low interest is a symptom or a cause, though, depends on whom you ask. “Funeral homes are reluctant to change because they’re saying, well, nobody’s asking for this,” says Darren Crouch, co-founder and president of green funeral goods supplier Passages International, whose products include biodegradable urns. “If Toyota came out with a Prius 20 years ago and they didn’t put it in the front of their lot, Prius would probably not be a thing right now. We’re trying to educate funeral directors that there is significant demand.”

As for Rob Shepherd, memorializing his wife via reef ball was more than an environmental decision, and more than an homage to her love of Ocean City. It was an unusual, yet heartening, way to process loss — especially for his grandchildren in attendance, who were too young to get to know Beth when she was alive. “We all took turns stirring,” Shepherd said of the process of mixing her ashes with concrete. “We decorated around the top with some of the trinkets and flowers. And we drew pictures with sidewalk chalk on the side — hearts, and goodbyes, and ‘Miss you.’ ”

Complete Article HERE!

An urn that doubles as a planter

— It’s the latest in L.A.’s death positivity movement

Inspired by universal stories of loss, woodworker C.C. Boyce crafts custom-made wood urns for cremation remains that can be used as planters.

By Lisa Boone

When Los Angeles woodworker C.C. Boyce selects locally sourced pieces of California sycamore and speckled maple at Angel City Lumber in Boyle Heights, the artisan has powerful inspiration for her custom-made planters: the deceased.

“I never intended to get into the death care industry,” Boyce says of the planters she designs and builds in her downtown Los Angeles studio. But these are not like the planters you find at plant stores and nurseries. Her planters are, in fact, urns filled with cremated remains and topped with a living plant.

She is turning urns into vessels for life, inspired by universal stories of loss.

“It has been such a rewarding experience,” she continues. “Especially during the pandemic. It felt good to know that I was helping people. We all felt that hopelessness while sheltering in place. It emphasized that you never know what someone is going through.”

Urns have been around for thousands of years, but the funeral industry has been slow to update them for the 21st century home.

Often, Boyce says, clients will reach out to her because they are struggling to find an urn “good enough” for their loved one. A person’s essence is eternal, after all, which explains why so many of us want to keep a part of our loved ones close after they have died.

Artisan C.C. Boyce demonstrates where cremation remains are placed in the bottom of a “Planturn” — a custom-made wood urn to hold cremation remains.

Their singularity is also what makes it so hard for us to process their absence, which is why so many urns end up gathering dust on bookshelves and inside closets. In some instances, Boyce’s clients have waited so long to find an appropriate resting place for their loved one, they can’t remember where they placed the ashes.

“I had a man message me that his wife died three years ago and he had given up trying to find something for her because everything was ugly, mass-produced and not her style,” Boyce says. “Another man said his design-savvy partner would be so angry with him if he put him in something ugly. I hear a lot of stories like that.”

Her untraditional designs are a part of the emerging death positivity movement, a largely women-driven attempt to shatter taboos and discomfort regarding death. You can see it everywhere when it comes to death services: in death doulas, green burials, diamonds created from ashes, death cafes and human composting known as natural organic reduction.

Urns, in particular, have been long overdue for a makeover.

People don’t like the fact that urns look like urns because they remind us of the morbid caricature of death, says Jill Schock, a Los Angeles death doula who works primarily with terminally ill cancer patients.

“The shape of the traditional urn is so embedded in our psychology,” says Schock. “We all have unconscious anxiety about death. When people see a traditional urn in your living room, they immediately know what it is and it makes them uncomfortable.”

She estimates that more than half of her clients, and Baby Boomers in particular, choose cremation over more traditional and costlier burials.

Enter Boyce’s Planturn, a modern, minimal and decorative cremation urn ($250-$600) composed of two pieces of wood and topped with a living plant. While many urns are vase-shaped, Boyce’s urns are geometric and created with woods sourced from fallen trees and coated in an eco-friendly finish.

The urns come in three sizes to accommodate pets and humans along with a muslin bag to hold the cremains and are topped with a plant holder. Boyce recommends succulents, cactuses and air plants because they don’t mind being crowded and don’t need a lot of water.

The top and the bottom of the urn are secured by strong hidden rare-earth magnets to create a seamless piece, often from two types of wood or cork. Sometimes people share stories with her, and sometimes they don’t. “They often have a lot going on,” Boyce says. “Grief affects people differently, and I try to respect that.” Over the last year, she has made urns for pets, parents and grandparents, a 19-year-old woman, a 2-year-old who died of leukemia, and an infant. “Those are heart-wrenching,” she says. “I use speckled maple for infants because it represents innocence.”

Boyce, 47, grew up in Wisconsin, the daughter of an engineer who installed a family wood shop in the basement. When she was 5, she attended her first funeral, an event she remembers vividly.

“They laid out my great-grandmother’s body at the wake, and everyone paid their respects,” she recalls. “I remember being curious and unafraid. They put a rosary in her hands, and I remember playing with it. The funeral director got miffed, and my mom told him to allow it because she was my great-grandmother. My mom was the one who made it so that death was not taboo, that it was something that should be acknowledged and talked about. A lot of people are uncomfortable with death. I’m not.”

Thirteen years later, during her freshman year of college, she experienced a series of losses so staggering, she worried her college professors didn’t believe her when she said she missed multiple classes to attend funerals. “I lost five people close to me in one year. Young, old, expected, tragic. An accidental overdose. A murder. A 4-year-old cousin was killed in a car accident.”

Last year, she lost her mother to COVID-19, and had two pets die.

A closer look at the Planturns: Boyce recommends airplants and succulents to top them off.

The interweaving of death and craftsmanship clearly inspires her work.

“Experiencing so much loss has taught me to hold on to empathy,” she says. “I never really lose sight of what people are going through. Sometimes people don’t take pet empathy seriously, but I do. I’m always willing to listen. And I always think about the people who died as I make each urn. Sometimes I try to match the wood to the pet’s fur.”

Her clients are grateful to have something so personal that reminds them of the ones they lost.

Julie Maigret, a Los Angeles interior designer who purchased a Planturn for two departed dogs and a cat, says no one has ever guessed that the planter in her living room is an urn. “I tend to it like a little garden,” she says. “I have something beautiful that reminds me of my pets. I placed a tiny trailing plant in the urn not realizing it is called red stem tears. There is nothing out there like what C.C. is making and that’s symbolic of the being that you lost. That’s very powerful.”

Juggling restaurant work and custom woodworking jobs since 2015, Boyce made her first Planturn in 2018 as a custom request for a friend’s father. Thinking it was a one-off, she was taken aback when she received an avalanche of positive responses after sharing the planter-urn on her Instagram account.

Boyce’s first thought on reading the comments was: “Am I on to something?”

For a year, she researched cremation, urns and the death care industry as she built prototypes in a variety of shapes and sizes. In 2019, she launched a successful Kickstarter campaign to help buy the equipment she needed to make the urns in an efficient manner. When she was laid off from her restaurant job in March 2020 due to the pandemic, it was the impetus she needed to pivot to making Planturns full time.

“I thought, ‘We’re in a pandemic, and I make cremation urns. Houseplant sales have skyrocketed. It’s now or never. I didn’t think I could quit my job until the urns were more successful. But as it turned out, I had to make the urns successful because I lost my job.”

As someone who deals with death regularly, Schock has seen how customized urns like these can help people process death.

“I know that people who have lost someone enjoy being around their remains,” she says. “This is the reason why people visit a cemetery or have an urn: They want to be close to their loved ones. It’s important to have the urn out and smile and think there’s my loved one, pet or child.”

That is Boyce’s mission.

Complete Article HERE!

The Books Keeping Me Grounded as I Contemplate Becoming a Care Partner to My Parents

By

My mother was driving home from work one drizzly day at the end of 2019 when she was struck by an oncoming car that had veered into her lane. Her car was totaled but, luckily, she sustained minimal injuries. Still, she was mere months away from retirement and, now, she had to grapple with the effects of a concussion, shoulder pain, and severe anxiety.

It was eventually determined that she would need surgery for her shoulder. But then the pandemic hit and her treatment was delayed.

A year and a half later, she still has shoulder pain and tires easily. She goes to physical therapy three times a week. Sometimes, she has flare-ups and needs cortisone shots. She’s nervous about driving very far.

My father, meanwhile, has been wrestling with chronic depression and anxiety for years (we two are birds of a feather…). In recent years, his hands have developed tremors that have become increasingly worse. Testing has revealed inadequate answers.

Amidst other medical issues, it also emerged that my father was experiencing memory problems. The other month, he was diagnosed with mild cognitive impairment which, in 50% of cases, can grow into full-blown dementia.

I’ve had an interest in end-of-life care for a while now, mostly because of what I observed when my mom was caring for her own father. I’ve written previously about the books I’ve enjoyed that tackle end-of-life care, compassion fatigue, and caregiver burnout. More recently, the topic has become a side niche for me in my journalism work. In a piece that went live on Rewire.org last month, I write about the lack of systemic support for unpaid family caregivers.

All this time, I felt I was preparing for something. After all, I’m 40. My parents are 70.

But as the past two years have brought more challenges — both with their health and with the decisions I was forced to make for my 6-year-old as COVID spread across the world — I realized I wasn’t prepared at all.

So, I turned to books. Because of course I did. That’s what I do. And while I’m still scared of the inevitable shift to come in the next few years, I at least feel more grounded in what it all means, and what options we have.

If you, too, are entering the “sandwich generation,” allow me to share which books were helpful for me.

Being Mortal by Atul Gawande

I actually read this one several years ago, but I’ve found it to be a good one to return to. In it, Gawande contemplates what it means to experience a “good death,” and shows how medical advances have led us to push back against the bounds of mortality in such a way our quality of life in later years is adversely impacted. He then shows that there is another way and that, rather than postponing death, we can enjoy life — until the very end.

Advice for Future Corpses (and Those Who Love Them) by Sallie Tisdale

A fellow Book Rioter recommended this one to me back when I first started to get nervous about my parents’ health. After reading a library copy, I ordered my own copy, and now I’m doing a reread so I can dog-ear pages and take notes. Every time my husband sees the book on the counter, he shakes his head and calls me a morbid weirdo. But this book is a revelation. Written by a practicing Buddhist who also spent a decade working as a nurse in the field of palliative care, Tisdale provides a comforting perspective on whether or not a “good death” actually exists (good for whom?); what you should and should not do, say, and expect from your loved ones in their later years; what you can expect at the different stages of aging; the nature of grief; and more. I may be a morbid weirdo, but at least I’m a morbid weirdo who now feels a little less afraid.

Can’t We Talk About Something More Pleasant? by Roz Chast

I actually ready this one right before my dad received his MCI diagnosis, and I felt as if I were looking into my future. There is the anxious, aging father who eventually slips into dementia. There is the willful, stubborn-as-fuck, aging mother who refuses to ask for help when she needs it. And then there is the daughter — Roz Chast herself — who doesn’t know quite how to handle this sudden shift without completely upending her own life. Beyond the parallels to my own life, I appreciated how this graphic memoir showed a woman pushing back against what is expected of daughters, making decisions that took into account not only the care of her parents but also of herself. Foregoing one’s own care is a trap many unpaid family caregivers fall into.

What We Carry by Maya Shanbhag Lang

My mom and I have always been close…in a slightly codependent way. So I immediately connected to Lang as she described the ways in which she needed her mother — how much she counted on her to be there and support her during hard times — and how disoriented she became when, after becoming a mother herself, things changed. There are a lot of layers to this memoir, but what felt particularly relevant to me were the moments of reflection around her changing relationship to her mother as her mom became swallowed up by Alzheimer’s and the way this informed how she mothered her own daughter. On top of that, threaded throughout the book, was a fable of sorts about a woman who carries her child across a river and, as the waters rise, must decide whether to save herself or her child. By the end, though, Lang begins to see that the question of who to save is not as black and white as it first appeared.

Complete Article HERE!

What is right to die?

‘The End’ central character depicts reality of dying with dignity

Harriet Walter as Edie and Frances O’Connor as Kate in ‘The End’

The End’ talks about euthanasia and why it might be really important for people who want to die with dignity

By Aayush Sharma

‘The End’ is an Australian TV series that talks about euthanasia, gender identity and more in a quirky manner. It follows three generations of a family trying to navigate through life while facing obstacles at different points of their lives. The show mainly focuses on Edie (Harriet Walter), a woman who has lived the last decade in complete misery and doesn’t want to live anymore. On the other hand, her daughter, Kate (Frances O’Connor), is a doctor in Australia who specializes in palliative care.

Edie hasn’t seen her grandchildren in many years and believes that she doesn’t have any will to live now. She is one of those who advocate ‘euthanasia’. According to her, everyone should be allowed to die when they feel like they can’t take it anymore.

The most important aspect of the story is that it is not superficial at all. It is based on real-life experiences where we have seen people fighting for euthanasia and demanding that they should be allowed to decide when they want to end their life.

Harriet Walter and Frances O’Connor in ‘The End’

What is right to die and why Edie wants to end her life?

‘Right to Die’ is a concept based on the opinion that human beings are entitled to end their life or undergo voluntary euthanasia. Voluntary euthanasia is conducted with consent. It is understood that a person with a terminal illness, incurable pain, or without the will to continue living, should be allowed to end their own life by using assisted suicide or to decline life-prolonging treatment.

However, there is always a debate as to who is empowered enough to assist in such matters. Showrunner Samantha Strauss has worked beautifully to portray this issue in a quirky manner. The show mainly follows Edie (Harriet Walter) trying to end her own life. When a log rolls from the fireplace and prematurely sets her house ablaze, Edie decides to jump from her house’s window and end everything. However, Edie survives and suffers injury on her left arm. She believes that if someone is competent to decide, nobody other than that patient should have the authority to decide whether life is worth continuing.

Belinda Teh Walks from Kings Park to the WA Parliament with Euthanasia advocates on August 6, 2019, in Perth, Australia

The attempt forces her daughter to move her mother from England to Australia to keep an eye on her. During one of the scenes, we get to know that she is a survivor of breast cancer and she has also had a double mastectomy. As soon as she is relocated to a retirement village in Australia, we get to know that there are many who want to die with dignity and not suffer in pain.

This is the entire crux of the situation: the right to die with dignity. In one of the scenes, a character on the show blames the hospitals for making people like them “cash cows”. He also says that the hospitals put them in misery so that they can make money out of it.

Youssef Cohen, 68, sits while undergoing cancer treatment as his wife Lindsay Wright looks on, on March 17, 2016, in New York City

The decision about whether to continue living in such conditions is among the most important that can be made. Many patients in a persistent vegetative state or else in chronic illness, do not want to be a burden on their family members.

Furthermore, the right to die with dignity is not an ordinary law. It is not a right granted to someone to kill, but it should be seen as an option for a conscious and free person to be understood and helped in a special request that is to end his or her life.

As far as the show is concerned, the idea of euthanasia is something that you would feel conflicted about. However, to Edie, it doesn’t. She feels that rather than going to a retirement village and die while being in suffering would be much worse than taking her own when she knows that it is time. This is not something that most people will understand, but as you watch the show you’ll also realize that it tackles the issue of the right to live as well. When Edie is confident that she wants to end her life, in the process, she also gets to know why living is important.

Let’s just say that ‘The End’ might be one of the most important shows of our times and tells the world about people in suffering.

‘The End’ premieres exclusively on Showtime on Sunday at 8 pm ET.

Complete Article HERE!